Project HOPE Co-Founder Guest Blog on Hub City Kids

Autism Awareness Month: Reach Out and Connect

 BY LISA LANE

 Autism can be an isolating condition for both the individual and the family. Our friends on the autism spectrum often struggle with effective communication and appropriate interaction. Many engage in unusual, repetitive behaviors (gestures, motions, or sounds) that create stress in public scenarios. Over time, families living with autism frequently become increasingly homebound, avoiding potentially difficult situations.

With the rate of autism now at 1 in 59 children, many of you now have a child with autism in your extended family or circle of friends. You can help combat the tendency towards isolation by reaching out to connect with those living with autism.

Here are a few practical suggestions:

Ask about the child. Often people are not sure what to say to parents who are dealing with this crisis and so they say nothing. Try a simple: “How are things going with Johnny?” Be attuned to the parents’ mood. Sometimes they may want to celebrate a small victory; sometimes they may need to acknowledge the difficulties they are facing.

Any time you can spend with the child is a gift to the family. These children are usually not invited anywhere. Their interactions are often limited to only a few people.

-If you feel comfortable taking the child for a brief outing, those moments can be priceless – for the family, who will benefit from the respite; for the child, who will benefit from the interaction; and for you, who will benefit from seeing the world through another’s eyes.

-If you don’t feel comfortable taking the child somewhere, offer to sit and “play” with the child. That might mean watching a video together, sitting side-by-side at the computer, or repeatedly pushing a ball back and forth. Sometimes unexpected connections happen during those seemingly simple interactions.

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Get down to eye level with the child. Our children with autism usually make limited eye contact so it is important to be ready for those glimpses.

Be patient. Children with autism often have limited conversational ability. Instead of trying to guess what the child wants to say, simply wait … with a look of interested expectation on your face. Give him the time he needs to get out whatever words he has.

Some parents may be sensitive about terminology. Many prefer the term “child with autism” rather than “autistic child” because that wording puts the child first.

Small talk can be tough. Bear in mind that these parents may have difficulty with the common small talk among parents about their children. It is hard for families freshly dealing with this diagnosis to join into normal child-related conversations.

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Be kind and encouraging whenever you can. A child who appears to be having a tantrum may be a child with autism overwhelmed by sensory input. If the child is having difficulty, a smile of encouragement to the parents may be the lifeline they need.

Through our therapeutic and educational programs, Project HOPE Foundation helps children gain skills that can open the doors to community engagement. We’ve been serving Spartanburg families since our inception in 1997, but we did not have a local place to call home until 2018. Project HOPE Foundation is incredibly grateful for the warm welcome and financial support we’ve received from the Spartanburg community, as we continue to expand our reach through our new clinic here.

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Lisa Lane is the Co-Founder and Co-Executive Director of Project HOPE Foundation, which she started with Susan Sachs in 1997 when they were both seeking autism services for their two young sons. 

USC Highlights Alumnae's Accomplishments

Cause for hope

2 moms' nonprofit give lifeline to families coping with autism

When Susan Sachs’ son Michael was born in 1992, autism was still a relatively rare diagnosis — one in 2,500 children — and public awareness was slight.

“Michael had a normal development, he was precocious, talking early, walking early, and then, just within a matter of weeks, we lost him,” says Sachs, the pain in her voice still fresh. When Sachs says “lost,” she means that her happy, communicative son slipped into the abyss of autism, withdrawn and non-communicative. 

At the time, she didn’t know Lisa Lane, another mother in South Carolina’s Upstate region. Lane’s young son, Colby, would also be diagnosed with autism spectrum disorder. But both mothers learned about a therapy called applied behavior analysis, or ABA. It seemed like the only life raft in sight.

“The autism diagnosis is very traumatic, and it’s frightening. When I saw ABA therapy and the potential that it could hold for my child — and I know Lisa felt exactly the same way — 
I recognized in one moment that it was going to be life-changing for him. Whatever I had to do to have it, as a family we would do it,” Sachs says.

Now considered the gold standard for children with autism, ABA therapy was difficult to find back then and typically wasn’t covered by insurance. Sachs and Lane met while their sons were sharing the same early interventionist, and their fierce commitment to finding help for their sons soon expanded into a desire to help other families in the same boat.

South Carolina alumnae Susan Sachs, left, and Lisa Lane launched Project Hope to help their own sons and others on the autism spectrum. Twenty-two years later, their foundation has helped hundreds of families across the state.

In 1997, Sachs and Lane formed a nonprofit called Project HOPE Foundation to establish a preschool for children on the autism spectrum. Sachs’ and Lane’s education at Carolina was vital for launching and running the foundation — Sachs had earned a master’s of social work in 1979 and had 10 years of corporate management experience, while Lane had earned undergraduate and master’s degrees before completing a law degree in 1986. 

By 2007, autism awareness had become far more mainstream — one in 59 children are now diagnosed with autism spectrum disorder — and funding became available for ABA therapy on a statewide level. The problem was still that few providers were available. 

“So parents knew there was this wonderful, evidence-based, life-changing practice out there, but they couldn’t find it,” Lane says. “We were able to start another program under our nonprofit that would provide ABA therapy, and that has now grown to serve about 300 people every day at our six clinics across the Upstate and in Greenwood.”

In fact, Project HOPE’s clinics are now primary training sites and places of employment for more than 200 staff members. The daily therapy is intensive and can be exhausting, but the results are gratifying. Most children with autism who receive ABA therapy make significant, measurable progress, and nearly half of them are eventually able to mainstream into society. The number often improves if therapy starts before age 3.

When Wendy Rothermel’s son Cade was diagnosed with autism spectrum disorder, her family life was upside down, punctuated by his frequent temper tantrums. A trip to Disney World ended early because of Cade’s erratic behavior, and the Rothermels huddled together, unsure how to help him. They soon connected with Project HOPE, and Cade’s therapy began. 

There’s two things that got us through this, and I’m not going to be shy about it — Project HOPE Foundation and the grace of God. Without those two, I don’t know where we would be.

Wendy Rothermel

“When he started, he was doing about 30 hours a week, and this was intense one-on-one with his therapist. It was tough as a mom because I would think he was doing too much. But I’ll be honest with you, the first few weeks we were able to get potty trained, and life just started changing,” Rothermel says. “We still had things we had to adjust to as a family, but immediately we had results.”

Seven years later, Cade graduated from HOPE Academy and started fifth grade as a mainstream student in a regular school. 

“He went to camp this year for the first time,” Rothermel says. “I would have never thought it possible that he would be able to go to camp and spend the night by himself with no therapist, with nobody he knows, but he did it. He took care of everything. 

“There’s two things that got us through this, and I’m not going to be shy about it — Project HOPE Foundation and the grace of God. Without those two, I don’t know where we would be.”

Not every child on the autism spectrum achieves that level of success at Project HOPE, but everyone makes progress day by day, Sachs and Lane say.

More than 20 years after launching Project HOPE, Sachs and Lane point with pride to the adult employment program their foundation supports. They’re also making plans for a future residential facility for adults on the autism spectrum who need some level of social support to live by themselves. But there is still a long way to go. Project HOPE’s resources are limited, and more providers of ABA therapy are needed throughout the state. 

“We’re constantly looking at ways to serve more families,” Sachs says. “Everyone needs hope.” 

Posted on: April 3, 2019; Updated on: April 3, 2019
By Chris Horn,chorn@sc.edu, 803-777-3687

Upstate Parent Magazine features Sensory Suite at the Well

Families of children with special sensory needs can now enjoy events at the Bon Secours Wellness Arena, sharing family time and making memories in a setting that includes all.

The Well now includes a Sensory Suite designed with community input to meet the unique sensory needs of those who have difficulty processing the sights and sounds of a typical arena show. The suite is part of an ongoing effort by the arena’s management and staff to be inclusive to all needs and abilities. That effort began with offering Friendly Access Sensory Safety Kits that include comfort tools for guests at all events.

“I recognized quickly that families weren’t coming to an arena event because a member of their family wasn’t comfortable here,” Beth Paul, General Manager of the Bon Secours Wellness Arena, said. “We wanted to remove that barrier.”

Without many examples upon which to model the suite, community organizations, including The Meyer Center, Project HOPE and the Center for Developmental Services, as well as the families they serve, were asked to provide feedback on the suite’s development.

“It did start with trying to find ways to break down barriers,” Paul said. “It’s more than just remodeling a room. It takes creating a culture that is welcoming. We didn’t know what we didn’t know.”

Representatives of The Well received training from Project HOPE before the sensory kits were made available.

“We continued training and we continued talking,” Paul said. “We have extended these initiatives into recruiting and our workforce.”

Tickets for the suite will be available for purchase for events, including hockey games, during which the view will not be obstructed. For other events, ticket holders can ask for access to the suite as a calming space. The suite debuted to guests at the recent Kelly Clarkson concert. Clarkson was so impressed with the idea that she talked about it from the stage. Upcoming concerts by Eric Church and New Kids on the Block will offer tickets to the Sensory Suite as well.

In addition to meeting sensory needs, The Well also offers Skate, Roll and Stroll days where families with children with disabilities can explore the ice in their wheelchairs or walkers, walk on the ice or be pulled around the ice in a sled or wagon.

“It’s a commitment that we’ve made,” Paul said. “It has to be a culture and something inherent in the business.”

To learn more, visit http://www.bonsecoursarena.com.

Bon Secours unveils sensory-friendly suite at the Well

GREENVILLE, SC - There’s a new way for fans sensitive to loud sounds or bright lights to enjoy a show comfortably at the Bon Secours Wellness Arena.

With space for as many as 14 people, the suite was designed to be a safe haven for those with sensory needs, particularly those on the autism spectrum.

The suite is decorated with calming gray walls, large and comfortable seating, beanbag chairs, and sound and light dimming glass so families can watch the show in a private and quiet room. There is also a “de-escalation” area in the suite with a privacy curtain and calming accessories and lights.

Project Hope Co-Founder and Co-Executive Director Lisa Lane says taking her son Colby to shows in the past has been nothing but challenging, and that this new suite is a game-changer for other families with children on the autism spectrum.

“We struggle with sound, we struggle with people being next to us, we struggle with meltdowns,” she says. “It was always a gamble. We'll buy a ticket and hope it works out. To have a space now that I know, if we come we're going to enjoy the whole event and we're going to enjoy it start to finish and together, is something special.”

The Project Hope Foundation, a non-profit organization that provides services for the autism community, worked with the Bon Secours Wellness Arena’s General Manager Beth Paul and other therapists to design the room.

“It started with conversation, and us listening,” Paul says. “We know that we’re on the very forefront, maybe the first!”

Families were able to test the room during a Kelly Clarkson concert Saturday, March 30th at the Well. Clarkson praised the suite during her show as a unique example for venues worldwide.

“All you venues across the world, this is the coolest thing to be inclusive, it's a sensory suite,” she said. “Everybody gets to enjoy the show!"

The “Sensory Suite” on the main floor level is now taking reservations for the Eric Church show on April 26th and 27th and New Kids on the Block on July 10th. For more information, click here.

Click HERE for WSPA video, HERE for WYFF video, and HERE for Fox Carolina video.

Spartanburg Herald Journal: Ledbetter: Don’t be quick to judge autism ‘meltdown’

Hold back and remember that there may be more to the situation.

I was in line at the doctor’s office not very long ago, trying to juggle my son James with one hand and my purse and clipboard of endless insurance and medical forms in the other.

And that’s when I saw her standing in the line beside me wearing a pink sweatshirt, leggings, and her hair pulled back in a ponytail. Like me, she had her hands full with her toddler, stroller and loaded diaper bag.

We made eye contact seconds before my little Houdini wiggled himself out of my arms and took off. Without hesitation, she stepped out of line and gently caught him by the hand just as my purse and the clipboard fell to the ground. She simply smiled at him and in the most inviting voice said, “Do you see the baby?”

She magically bought me enough time to gather my belongings and quickly hand the paperwork to the nurse. As I rushed over to say “Thank you,” she smiled and said, “It’s OK. I’ve been there.”

There was no judgment. No look of pity. No head shake or raised eyebrow. We smiled again as I scooped up my son and headed down the long hallway to our appointment.

Moments when our kids do something unpredictable or slightly embarrassing are not uncommon for parents. Kids beg for candy in the grocery store or boldly refuse to eat their vegetables in front of company.

We’ve all been there, right?

But when you have a child with autism spectrum disorder, these moments can be very different because the challenges — communication, social interaction, repetitive behaviors, meltdowns — can often be misinterpreted as defiance or bad behavior.

And in addition to managing the needs of our child in uncomfortable situations, we also encounter inappropriate comments, unsolicited advice or awkward stares from bystanders.

I once chased down a man at the trampoline park after he accidentally brushed against my son’s arm. This was during a phase when James was experiencing quite a bit of repetitive behaviors, and if something or someone inadvertently touched him then he had to touch it again. Just imagine the man’s face when I asked him if my son could touch his elbow.

Of course, I explained the circumstances and apologized for any intrusion. Thankfully he graciously allowed our request, and we were able to resume our afternoon without a major incident.

That’s not always how it goes. There are many times when we have to say no and we deal with the behaviors that follow. That often means taking a break somewhere quiet or heading home earlier than expected.

I’ve left groceries in buggies, multiple birthday parties before cake, and I can’t tell you how many family gatherings my husband and I spent tagging out so one of us could visit while the other played outside with James.

And while autism has brought its challenges, it’s also brought tremendous beauty to our lives. James is super smart, funny and devilishly charming. He loves people like no one I’ve ever encountered. He enjoys making new friends and calling them by name. He gives the best hugs and has the most infectious laugh.

With the help of our amazing support team of therapists and teachers, James is thriving and learning more each day. He has taught me more about life than I ever expected and has opened my eyes to parts of the world — and people — that I otherwise would have missed.

But if you catch us in the midst of a meltdown, you won’t see all of that. Instead, you may see a tall, almost 7-year-old boy who bolts out of line at a doctor’s appointment because he’s scared — or cries when he gets a haircut because he can’t stand the feeling of hair on his neck.

And when you see this happening, you may stare, question my parenting, or even offer advice. But I hope after reading this you will hold back and remember that there may be more to the situation.

Maybe you don’t know what to say or do. And that’s OK.

All we need is a friendly face and someone who is willing to understand — or even give a hand and say, “I’ve been there.”

Amanda Ridley Ledbetter lives in Spartanburg with her husband and two children. She is the admissions director at Oakbrook Preparatory School.

Autism diagnosis leads Simpsonville family to Project HOPE

Becki and Tommy Plumer felt that something wasn’t quite right with their son, Jack, early on.

At 18 months old, he couldn’t link his words together, his mom said.

Then he had trouble grasping a crayon.

And he couldn’t engage socially with people.

Eventually, their sweet little boy was diagnosed with autism spectrum disorder and their search for help led them to the Project HOPE Foundation.

“It's been a blessing for us,” Becki Plumer said. “He has just thrived with this program.”

The foundation provides services to more than 200 children with autism including education, support and individualized applied behavior analysis therapy. It also offers social groups and other programs for adults.

The nonprofit was co-founded in 1996 by Lisa Lane and Susan Sachs — now both executive directors — after their sons were diagnosed with autism and services were hard to come by.

Lane said that with the condition now affecting 1 in 68 children, the need for Project HOPE’s services is more critical than ever.

“Literally hundreds of children are waiting for services, and that number is growing every day,” she said.

“Unfortunately, most funding sources do not cover the cost of providing autism treatment," she added. "We rely on the generosity of our supporters to be able to provide these life-saving interventions for children, youth, adults and families who are living with autism.”

One of the foundation’s major fundraisers is An Evening of Hope, a gala event that begins with a cocktail reception, dinner, and live and silent auctions followed by music and dancing.

The auctions include items such as two tickets to see “Hamilton” at the Peace Center with dinner and hotel, two VIP passes to watch a live filming of America’s Funniest Videos in Hollywood with airfare and accommodations, a Harley Davidson motorcycle, and a hot tub from Hot Springs Pools & Spas.

Last year, the event raised more than $1 million. This year’s event is being held on April 28 at the TD Convention Center.

“Last year’s Evening of Hope gala was a phenomenal success,” said Sachs. “We are always amazed at the generosity of this community. As an organization, we know that every minute matters and every dollar counts. "We hope to once again raise lots of dollars so that we can provide many more minutes of service.”

The Plumers, of Simpsonville, spent three years on a waiting list to get Jack into Project HOPE, Beckie Plumer said. And while they waited, Tommy, a vice president at Synnex Corp., launched a golf tournament to benefit the school.

Since Jack, now 11, began going to Project HOPE three years ago, he’s made incredible progress, his mom said.

“At HOPE, classes are so small. It’s only eight children and a teacher and assistant,” she said. “They can pinpoint where he needs to be."

Socially, she said, Jack is now able to understand other people's facial expressions and vocal tones and engage with them. And academically, he's making great strides, improving in writing and math especially.

"He is a completely different child," Plumer said. "At HOPE, he gets understanding and support. We'll stay as long as we can."

For tickets to An Evening of Hope, go to www.projecthopesc.org/eoh.

2017 Hope Gala

Autism can sometimes be devastatingly dark ... but we are determined to bring light through our range of services. To fund these services, we rely on generous people like the 530 who attended our Evening of Hope gala on Saturday. Want to see what these dollars are important?  Take a look:

Wofford College Turns Blue for Autism

The main building at Wofford College turns blue for autism.

The main building at Wofford College turns blue for autism.

(March 29, 2017 FOX Carolina)
SPARTANBURG, SC (FOX Carolina) -
Wofford College is turning blue and shining a light on autism. It's all part of the Autism Speaks Light It Up Blue campaign.
Wofford's Main Building will be lit in blue starting on April 2 for World Autism Awareness Day, and stay that way throughout April for Autism Awareness Month.
"This is something that is near and dear to my heart. I felt compelled to bring it to Wofford as I am an autism parent," said Crystal Crawford, who organized Light It Up Blue on the Wofford campus.
Crystal Crawford's son was diagnosed with autism five years ago. 
"We have a son named Will who is about to turn 9 who was diagnosed with autism when he was 4," said Crawford. 
Crawford works in admissions at Wofford College and says she hopes to raise awareness about autism, by shedding some blue light on the disorder. 
"My hopes are that people will ask questions and inquire about what is it, what does it mean for a college student here on campus, and how can I better serve or communicate with them," said Crawford.
Guest speakers addressed the need for raising awareness about autism on college campuses.
"I think we need to bring a lot more attention to our friends with autism who are older and who are in the college setting," said Joanna Hayes, a case supervisor with Project Hope Foundation.
Students also talked about what it is like to be in college and have autism.
"90% of learning to live with autism is probably just learning to recognize it for what it is," said Zachary Howell, a sophomore studying intercultural studies at Wofford.
Howell says that part of learning to live with autism is educating others, and he hopes the Light It Up Blue campaign will do just that.
Find out more about the Light It Up Blue campaign here
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